Lots of news - 5/16/16

Hi everyone :)

I figured I would give mom a break from writing this post since I haven't exactly made things easy on her these days. Let's consider it a late Mother's Day present!

You may not all realize it, but this week marks one year ago that my symptoms began. Although it was a rough road to finally get to a doctor who was able to figure things out, I am so grateful to have found the team I have. I would certainly not be living the life I am without them. I want to begin by thanking all of you for following our journey and sticking by our family this past year. All of the prayers, gifts, visits, cards, pearls of wisdom, rides, and opportunities to unload the stress of it all has been more than we ever could have hoped for. We are truly lucky to have all of you in our corner!

As many of you know, the Catasaqua Area Showcase Theater heard of my story and offered to help. During all of their showings of the play Mary Poppins last month, their Families Helping Families program collected donations for us and another family. All of the money collected was then matched by the cast and board. We weren't expecting a great deal, just hoped for enough to offset some of my medical expenses such as my COBRA which is a significant cost when on disability. Surprisingly, we received enough to cover about 5 months of my COBRA health insurance coverage! As you can imagine, mom and I cried like babies at first, but then the joy set in. If all goes well, which of course we hope it does, this money will allow me to have a great insurance plan until I am able and ready to return back to work. The word thankful doesn't even begin to describe how I feel. So many of you contributed to this fund and the CAST family made it all possible. I am just so blessed to be a part of the community I am :).

Alright back to real life and what's been happening on the medical front. I returned to physical therapy a few weeks ago. Unfortunately my strength and range of motion in my neck and right shoulder did decline a bit after my gall bladder surgery so there has been some making up to do in those areas. Most of my pain now is nerve pain in my mouth (radiation damage) as well as in my shoulder and neck from surgery. I am also beginning to have a lot of spasms in my jaw and my right neck/shoulder. Because the damaged nerve has caused paralysis in one of my big muscles, all the little ones are working overdrive to try to take over. Unfortunately this isn't a good thing and has been difficult to control. My PT is concerned about how slow my nerve function is returning and how that will hinder my return to work. Brain injury was a very physical world and there's chance my body won't be able to handle it. Thankfully, being an OT means that there are millions of options for me to consider going forward, I just need to trust that the purpose of all of this will show itself in time and lead me down the right path :).

Last week mom and I made an unexpected trip to philly because I had a sore spot on my tongue that would not heal. You can only imagine the level of panic that had set in by the time we got to Dr. Weinstein's office. Deep breath everyone, everything was fine! All the new foods and chewing I have been doing was making my tongue rub against my tooth which caused the sore spot. The downside is I have to cut back to mostly just soft or puréed foods until it heals. That is how I get the majority of my calories because chewing makes me to tired after just a small amount of food, but it was nice to have a few goldfish or a potato chip here or there :). The trip also paid off because we were able to get Dr. Weinstein to schedule my feeding tube removal!!

Today mom and I went down to Upenn for a super long day. Pet scan prep and the scan itself takes about two hours and began at 8am, that meant a 430am wake up call for us :-/. Everything with that ran fine, most of it I spend sitting by myself relaxing while the injection they give me runs its course. After my scan was done I had an appointment  with Dr. Raper to have my feeding tube pulled. I have been waiting for this moment, despite the discomfort it causes, for many months. Mostly because summer is coming and I want to swim! Not to mention the tube itself is almost two feet long and I'm so sick of tucking it in to my underwear all the time and being unable to sleep on my belly! I have seen at least a dozen tubes pulled while working as an OT and it is never a pleasant few seconds. However, the long term benefits to increase my quality of life are so worth it! Although I wasn't thinking of that when he did it. All I could think of was "holy hell this is awful!" And then it was done :). The grossest part you ask? Oh that's the fact that for the next few days my food can seep out of the wound on my stomach. Awesome. 

After seeing Dr. Raper, mom and I grabbed some food and headed off to see Dr. Lin, my oncologist, in hopes that he would already have my pet scan results and we wouldn't have to wait until my Wednesday appointment with Dr. Weinstein.  Our wishes came true :)! The final report wasn't in yet, but he looked at the scan himself and said there are no obvious changes or signs of cancer! Thank you for all the prayers, they are certainly working! He was very happy with how I am doing over all and is hopeful that when I come back for my scans in August we will be able to discuss my return to work! Hopefully this is the turning point we were hoping for. 

So what comes next? I see Dr. W on Wednesday for my official pet scan results and from there might be able to schedule my surgery to have my tongue released and hopefully some scar tissue removed to help with my pain and mobility. Keep those prayers coming that I get the go ahead and can keep moving forward!

Thank you to all of you again for the love and support. This has been an extremely difficult year and I would not have been able to do it without all of your support and prayers! We are far from done but in a much better place than we were a year ago. 

Lots of love and thanks,

Devin